ADHD Nation

Editorial Note: This post is a review by Johanna Ryan of Alan Schwarz’s just released ADHD NATION: Children, Doctors, Big Pharma, and the Making of an American Epidemic.

Watching the triumphant final chapter of Michael Phelps’ Olympic swimming career last month, you couldn’t help admiring certain strengths that went beyond the merely muscular. The rigorous four-year training plan that allowed him to push his aging body (for an Olympic swimmer, thirty-one is downright geriatric) to go for the gold one more time.

The determination. The discipline. The focus.

Seeing him on TV with his fiancée and newborn son, confidently planning his future, you might be surprised to learn that millions regard Michael Phelps as having a dangerous, even life-threatening brain disease. Or that his decision to stop taking stimulant medication in his early teens remains controversial to this day.

Phelps’ “disease,” of course, is Attention Deficit Hyperactivity Disorder or ADHD, diagnosed when he was eleven years old. In his 2008 autobiography, Phelps revealed that he had stopped taking Ritalin at age 13 (with the support of his mother and doctor). He credited the structure imposed by his sport for helping him overcome his hyperactive, distractible tendencies—and even referred in passing to the Ritalin as a “crutch.”

While some ADHD skeptics cheered, the medical establishment reacted with horror. So did mental-health nonprofits, notably CHADD (Children and Adults with Attention Deficit Disorder). When the young champ was arrested for marijuana possession in 2009, and entered a rehab program after a drunk-driving charge in 2014, the critics pounced. In a recent column in Psychology Today magazine, psychologist Stephanie Sarkis scolded those who supported Phelps’ decision to stop taking Ritalin:

“While I have not personally treated Phelps, there is overwhelming scientific evidence that when ADHD is not treated with stimulant medication, your chances of substance abuse increase dramatically. When brain chemicals are low, the body finds a way to replace them.”

ADHD was “a biological, neurological, and genetic disorder,” Sarkis warned, and ADHD medications were just as vital as insulin for diabetics. The column ended with a shout-out to “the 11 million of us in the United States that do have ADHD,” including Phelps.

As of 2013, that includes 15% of American children, and 20% of boys. It also includes at least 10,000 toddlers aged three and under, as well as millions of newly-diagnosed parents and grandparents.

How on earth did we get here? That’s the question Alan Schwarz tackles in his new book, ADHD Nation.

The ADHD industrial complex

Schwarz begins by making clear that he’s not a radical ADHD skeptic. It’s a real medical condition, he says, and for some severely affected children the meds can be a godsend. Yet we know far less about this disorder than its promoters would have us believe. We don’t know for sure that it’s genetic. We don’t know what causes it. Most importantly, there is no objective test to distinguish those with “genuine ADHD” from those who are just a bit more active, or distractible, than average. Nor can we reliably tell the “ADHD child” from the child who acts up due to troubles at home, anxieties at school or simply being the youngest kid in his grade. Diagnosing ADHD remains a profoundly subjective project, influenced by social expectations, economic pressures and drug marketing campaigns.

Schwarz tells the story of how those forces led to the rise of an “ADHD Industrial Complex” through the career of one of its architects, psychologist Keith Conners. Conners’ initial studies in the late 1960’s of the potential benefits of Ritalin for children with severe behavioral problems did not attract much interest. The problem was known as “hyperkinetic reaction of childhood” or “minimal brain dysfunction,” and many parents reacted with alarm to efforts to medicate schoolchildren.

In 1980, the American Psychiatric Association’s DSM-III diagnostic manual redefined it as ADHD, based on a broad and somewhat confusing checklist of both “inattentive” and “hyperactive” behaviors. ADHD was estimated to affect between 2-3% of schoolchildren. By 1989, however, a streamlined checklist developed by Dr. Conners was being used by pediatricians and family doctors to diagnose the disorder, usually in a single office visit.

The rise of the ADHD advocacy group CHADD, and its success in adding ADHD to the list of disorders qualifying children for special-education funds, further fueled the rise in diagnoses. In 1995 a TV documentary revealed CHADD’s major source of funding: the makers of Ritalin, then Ciba-Geigy, now Shire Pharmaceuticals the makes of Adderall. Despite the temporary furor, CHADD’s industry-funded work spreading ADHD “awareness” continued to shape the views of parents, teachers and health professionals. Drug companies piled on with ads depicting the meds as panaceas for childhood problems from poor grades to temper tantrums and failure to take out the garbage.

Manufacturing consensus

One of ADHD Nation’s highlights is Schwarz’ dissection of a key 1999 study that changed the national conversation on stimulants and ADHD. Known as the “MTA Study,” it was hailed as showing that the pills were clearly superior to psychological therapies or school and home modifications. Here are the actual rates of “significant improvement” that study found in four randomly assigned groups of children with ADHD:

Medication + therapy: 68%

Medication alone: 56%

Therapy alone: 34%

“Neither”: 25%

As Schwarz points out, this meant that 44% of kids treated with meds alone failed to show significant improvement. Moreover, the kids counted as getting “neither” were not untreated. Rather, they received whatever “usual care” their doctors recommended – which in most cases meant stimulants! Yet their uninspiring results were not factored into the study’s view of medication. While the MTA Study was publicly funded, the experts enlisted to carry it out, by 1999, almost all had extensive ties to drugmakers – including Dr. Keith Conners.

Schwarz adds that a study lasting just over one year may have underestimated what behavioral therapies could do. It also oversold the benefits of medication: A 2009 followup of the “MTA Study” failed to find any significant differences between the original randomized treatment groups after three years! The group a child was assigned to “did not predict functioning six-to-eight years later,” the authors concluded.

Yet the official story was one of triumph: “Study Says Drugs Best Help for Attention Deficit,” as one headline put it. For drug companies and their allied medical experts, this message was pure gold. It also resonated with other social forces: managed-care insurance companies that balked at paying for extended therapies, not to mention cash-strapped public schools under pressure to cut their budgets. As one physician observed: “We’ve decided as a society that it’s too expensive to modify the kid’s environment. So we have to modify the kid.”

By 2013, the APA’s diagnostic manual estimated that about 5% of school-aged children had ADHD – but the actual rate of diagnosis was three times that amount and growing. Dr. Conners, now retired, came to regret his own role in this ADHD boom, calling it “a national disaster of dangerous proportions.”

The prescriptions, and the damage

Schwarz’ account of the overselling of ADHD is vividly and skillfully told, but it’s nothing particularly new. The scandal over the drug-industry ties of leading researchers in child psychiatry, particularly the group around Joseph Biederman at Harvard, has been covered in depth, as has the story of CHADD and the campaign to spread “ADHD awareness.”

ADHD Nation’s real contribution may be its focus on the damage done to a growing number of teens and young adults treated with stimulants. Schwarz introduces us to two young addicts whose problems started with a doctor’s prescription for Ritalin or Adderall. Both were almost certainly mis-diagnosed, and their paths to addiction may be more common than we suspect.

Jamison’s story

At fourteen, Jamison Monroe was a top student and star athlete actively recruited by St. John’s, the leading private high school in Houston. There he faced intense competition from classmates whose families, like his, all expected them to aim for elite Ivy League colleges – and got his first “D” on a biology exam. Jamison panicked. Then he borrowed a pill from a classmate diagnosed with ADHD, and thought he’d found a solution.

Jamison took the lead in his own misdiagnosis. He persuaded his mother to have him evaluated for ADHD, then easily convinced the doctor with carefully rehearsed complaints of distractibility, sagging grades and difficulty sitting still. He walked out with a prescription for Adderall, a newly patented amphetamine for ADHD that was actually just a repackaged version of an older weight-loss pill known as Obetrol.

At first Adderall looked like a win-win. Jamison got his grades back on track, and he found it easy to balance his demanding school schedule, the football team and a fun social life. Soon, however, he began taking extra pills – and discovered that combining alcohol and Adderall allowed virtually unlimited “partying.” Before long he was expelled from his elite high school, and his grades and behavior were increasingly erratic. It wasn’t till he got to college, however, that his frat brothers taught him a new trick: grinding up his Adderall and snorting it like cocaine.

Kristin’s story

Kristin Parber, by contrast, became a casualty of ADHD overdiagnosis long before her first act of “substance abuse.” After thriving in a flexible, learn-by-doing Montessori preschool, Kristin transferred to a strict private grade school, and trouble set in. By age eight she was prescribed Ritalin to control her hyperactive behavior, conflicts with other kids and classroom underperformance.

The little girl told every adult in her life that she hated the pills – and while her classroom behavior improved, schoolwork remained a struggle. The root of her problem, she now feels, was not ADHD but anxiety, which the Ritalin only made worse. By age eleven Kristin was on three medications for three “disorders”: Ritalin for ADHD, Xanax for anxiety and Lexapro for depression. Such multi-drug treatments for children, once unthinkable, became commonplace by the early 2000’s, and unrecognized problems with stimulants may have played a major role.

By her early teens, Kristin was crushing and snorting her Ritalin, mixing it with alcohol and street drugs, much like Jamison Monroe. Both went through multiple rehab stays before their addictions to their “medicine” were recognized and dealt with. Both now work at a treatment center started with support from the Monroe family, one of many now treating young people with prescription drug addictions.

This problem is often dismissed by drawing a line between proper medical use of the drugs, and illicit “abuse” by those who buy them on the black market. However, as Jamison’s and Kristin’s stories illustrate, many cases of abuse start with a doctor’s prescription – and quick-and-dirty “checklist” diagnoses like the one Jamison Monroe obtained are widespread. The line between “patient” and “addict” is blurrier than we think. In an April 2015 story for the New York Times, Alan Schwarz examined the price paid by growing numbers of adults using ADHD drugs to get ahead at work: Treatment stays for prescription stimulant addiction are on the rise, and emergency room visits for “nonmedical use” of the pills tripled from 2005 to 2011.

For a few, the consequences can be fatal: Schwarz tells the tragic story of Richard Fee, a Virginia college student who scored an Adderall prescription in college by checking the right boxes. Fee’s medically-endorsed amphetamine habit led to rapid addiction, paranoid delusions, and finally to his suicide in 2011.

Where do we go from here?

Some critics of mainstream psychiatry will dismiss Alan Schwarz book because of its first sentences: “ADHD is real. Don’t let anyone tell you otherwise.” Certainly Schwarz’ acceptance of the idea that ADHD is a proven, biological disease entity has its contradictions: He admits that its basis in “some sort of dysfunction among chemicals and synapses in the brain” is no more than a theory, and one open to manipulation. However, for severely affected children, the drugs may provide important benefits, and many have used them without evidence of harm.

At the book’s end, Schwarz suggests that outright ADHD denialism is not just unwise but “simply doomed.” The drugs are “here to stay,” he says. What we should concentrate on is beating back a tsunami of overdiagnosis that is motivated more by commercial interests than science.

“Whether it’s just one child or today’s six million,” Schwarz concludes, “if we’re going to tell a kid that he has a permanent, potentially devastating brain disorder, we’d better damn well be right.”

Comments

Very interesting post. We have an older son who we have always thought had/has ADHD. He was born in 1975, after being induced too early, and nearly dying in an emergency Caesarean section. It was obvious from the start, when we got together with other mums who had had their babies at the same time, that he was way behind in his ‘development’ skills. One of his eyes didn’t open, for which he had surgery aged 3. He had an enormous hernia when only 3 months old. By the time he started school, he had learnt to cut difficult corners by being naturally charming and engaging, but wanting attention constantly, and by not being ‘biddable’. In other words, whatever we did to try to teach him about the consequences of his actions, it was as though we couldn’t get through to him, although we loved him deeply. When he was 7, a child psychologist said it was immaturity, and a lack of spatial skills, and he would grow out of it. Another brain specialist talked of damage. We never ever were offered medication. We worked tremendously hard to encourage and support him with any interests he had. We think when his younger brother arrived 4 years later, it was a terrible shock to his system, as someone else merited attention too. Our older son has managed his life well, according to his own lights. Sadly I don’t feel we ever truly managed to understand each other, but his passions, like cars and travel, and his natural charm carried him through. I wish when he was younger we had known more about ADHD, but in the end, we did our best, we think he is happy in his life, and we’re glad, having read the above, that he didn’t have medication. We think it was finding people he could engage with, that made his life fulfilling. We’d like to say it was a happy ever after situation, but it wasn’t, because we think he found us lacking in giving him enough attention as time went on. But one day we hope he’ll look back and remember the love he received, and realise we did our best, which is all any parent can do.

Heather, I would say – thank your lucky stars that medication was not offered to you. I have seen so many children reduced to sad shells of their former selves – all because they were ‘failing’ to engage with the rules of school life. Putting a child on Ritalin or any of the other medications used for supposed ADHD problems is cruel. Before treatment, they were a handful – but a full-of-beans character. On medication, their appetite, for both food and life, disappears. The purpose of medication should be to help the child to be able to learn the rules needed for a happy existence with others – but that is just not true of the strength and dosage that many children are put on. It kills their enjoyment of others around them. Having them medicated may give parents a quieter life but present them with new problems far more worrying than the original ones. It provides a teacher with a calmer classroom – but loses a spark which that same child previously provided. Provide an assistant to help the child to cope – and ditch the medications I say!

Peter Hitchens is one of the few journalists and ‘thinkers’ of the age who is not afraid to say what he thinks, introduce common sense, and swim against the tide. His books are very hard hitting and interesting. He mostly makes a lot of sense. Another contributor to the Press with thought provoking and non-mainstream articles was Dr Anthony Daniels, aka Theodore Dalrymple when writing his books. Sadly I think he’s retired now. He was a psychiatrist working in the NHS. These are people who remember the old days when things weren’t perfect but the vast Pharma machine had not yet been unassailably rolled out, and when patients did get listened to, a bit. Dr Daniels was a realist. He put across the idea that life wasn’t constantly great for any of us and that pessimists were probably right about it; if this truth was accepted, people would be less discontented with their lot, and might stop reaching out for ‘magic pills’ to change it.
This could apply to children too. There are lots of things which can make a child hyperactive and seem ADHD. Ours never drank Coca Cola more than once or twice because they both behaved as though they were ‘high’ when they had some. We all know about food colourings being considered by some to have a similar effect. Lobbing endless chemicals and sweet sugary foods and drinks into kids is bound to affect their blood sugar and give ADHD symptoms. Our older son had a very bad start in his life as a little chap, (birth etc) and we didn’t know how best to help. Doctors and others tend to label parents as ‘fussing’, when all they are doing is asking for a modus operandi to work with. Our son by the time he was 13 at last managed to tell us that print always ‘jumped up and down’ for him. He had thought it did that for everyone.(!) poor guy, how frustrating school must have been for him, no wonder he’d messed around and given up. After that we got expert help for him with his eyesight, he was shown to be cross lateral, and spent a year in a special fee paying school for dyslexic youngsters, finding ways to fill in gaps he’d missed in ‘normal’ school. The RNIB assessed him and gave him a computer he could talk to, to make writing easier. But even so, we did not get support from his father’s family members who had sons who also had dyslexia, because of his ADHD kind of behaviour. All the way through his early life, as his parents, we were judged as inadequate, because my father had been manic depressive. The stigma of this has dogged us for years. No wonder people keep quiet about mental illness in their families! The stupid small mindedness of those who should know better can make others’ lives incredibly difficult, when they are struggling against tremendous odds anyway. This can limit potential and cause total loss of self esteem. Where did compassion go, or was it never there in the first place?

Heather – I hope that your son was also tested for Irlen Syndrome, as that is the cause of print seemingly moving or crawling on a page. If you’re not aware of Irlen syndrome – I would recommend reading Helen Irlen’s book ‘Reading by the Colours’. Fascinating. I am an Irlen Screener ( not used since retiring from teaching) and watching a child suddenly being able to ‘read’ using a coloured filter is really worthwhile. Our son has the syndrome and has the filter built in to his glasses. This helps greatly with such things as using stairs etc. A note of interest – he was always unable to put whatever he read into long-term memory simply because reading was such an effort plus short-term memory problems due to dyslexia and its neighbouring problems. Once he got hold of a Kindle, he found that, by reading white on black and using a large font, he was able to enjoy reading in the same way as the rest of us. Reading his Kindle is now one of his coping strategies during a stressful period. The wonderful ways of the human brain!

Mary this most interesting – he went to see a special ophthalmologist called Mr Holland, at that time working in Cheltenham, and had to track red lines or dots with his eyes. The one which was dodgy from birth did not work properly. ( I have one the same but I was luckier than he, in that my ‘lead’ eye worked on the correct side with my lefthandedness but his was the opposite). He was then given peach and turquoise overlay sheets to put over print when he read books. I think it certainly helped, but even so, his concentration and impetuosity was difficult to understand sometimes. We found a lovely dyslexia teacher who came to give him help privately. We all used to smile because he had such charm and his excuses for not working were so wonderfully inventive! However, once he discovered car magazines, skateboard half pipes, and as we were on a farm, an old landrover to drive when he was 14, he was in his element. He was also great at cooking, welcoming and giving parties. When travelling NZ he picked apples and made the reject ones into fruit slices which he sold to other backpackers at a good profit! He got 8 GCSEs and Geography A level (with a massive amount of help from his dad), and wanted to teach dyslexic children himself, did some teaching practice when at Technical College, but he wasn’t considered academic enough. He was always outgoing when meeting new people. Having read what you have all written, I am indeed grateful he did not have any medical interventions.

“Indeed, Alan Schwarz of the New York Times has written a great series of articles on ADHD. His stories, which have appeared on the front-page of the New York Times Sunday edition, have impact what some notable and long-time ADHD insiders have to say about diagnostic abuse and associated drug use. However, the broader public seems to be relatively numb”.

David Guttman is a grounded and investigative dad looking out for his daughter which paid off, how do we answer his final question

David Guttman (MIA Author) on September 12, 2016 at 8:36 am said:
Randall,

You’re kidding right? I can recite chapter and verse of the TADS study as well as anything Healy, Whitaker or Gøtzsche ever said or wrote about it.

But it occurs to me that part of what I had to do to educate myself was to synthesize an enormous body or work, watch endless hours of YouTube videos and read 3 complete books.

It seems like putting together a series of clear and concise presentations targeted at parents (one for each of the most common diagnoses) that would do four things:

1. Provide in one easy to digest and understand place the important background knowledge to understand the diagnosis and treatment options

2. Links to key research and studies done on subject with short and easy to understand description of what was done, key findings

3. Questions to ask doctor, therapist and / or psychiatrist to test their knowledge and also put them on notice you can’t be fooled with medical BS and buzzwords

4. Links to further reading for those people that feel they need a grasp of every detail

I could do this but I don’t know how to best get it into the hands of parents that need it.

A child who struggles with lack of concentration and hyperactivity does not get the satisfaction from everyday things like reading, so they can’t seemingly fly away in their imagination. When they are constantly ‘on the go’ they wear the parents down with their need for attention, and without meaning to do so, they try their patience. However much the parents try to reason and explain why it would be good if they could calm down and behave, the truce doesn’t seem to hold for long. It’s as though you have to keep starting from scratch again and again. One side effect is that any other sibling gets put into the background, because they are quiet and compliant and easy going, but as they grow up, they watch the parents’s lack of ability to ‘handle’ the situation, and they start assuming that they need to protect the parents, so they are old before their time. There are ways of helping the ADHD youngsters to moderate their behaviour, like praise for when they do interesting and helpful things, building up their self esteem, helping with their school work if they are falling behind, and so on. The main regret I have now is that whilst working all hours at this, I took my eyes off the worries of the younger child. It really isn’t easy looking after an ADHD child – but you don’t want drugs, you want lots of friends who know and understand, do not criticise, and help you to keep up with the pace. Most of all, you don’t want grandparents who assume your child behaves as it does because of your poor parenting. You need to be able to see the funny side of it all, and hope that the child will grow into a happy person.

I so agree with everything that you say Heather – especially that medications are not the answer. It is society’s attitude that MUST change – before it’s too late and we lose even more ‘real people’ to become ‘compliant robots’. This is true of many ‘difficulties’ that modern generations are labelled with. Everything that you can say about ADHD is equally true of Dyslexia, Dyspraxia, Dyscalculia and all the other specific learning difficulties. ADHD is the only one that has been grabbed by pharma companies and transformed into an ‘illness’ – so far!
If each child was allowed to progress at his/her level of capability; if teachers were trusted to prepare according to the attainment level of the child; if schools were not forever reaching for an unattainable ( in many instances) standard and if Parliament allowed the professionals to get on with the job for which they were trained without all the chopping and changing of curriculum, – then, and only then, we may see glimpses of a society that shares the talents of all on an equal playing field, celebrating -rather than medicating – differences in the very thing that makes us all ‘human’ which is our personality.

Thanks so much for this, Heather! Even if you don’t believe in a defined “brain disease” called ADHD (and I’m a skeptic) it’s important to realize there are big variations in children’s temperaments and rates at which they learn certain adult skills — like sitting still. Not to mention a range of difficulties caused by birth difficulties, head injuries, fevers, etc., etc. Putting kids on long-term stimulants isn’t the answer, but the alternatives will never be easy or perfect. They take time, caring and patience.

One of the saddest things in Alan Schwarz’ book was that quote from the doctor who said: “We’ve decided as a society that it’s too expensive to modify the kid’s environment. So we have to modify the kid.”

Oddly enough, one source of hope may be that the next generation is coming into parenthood having learned the hard way about Adderall, Ritalin and Vyvanse. (Especially if they’ve been to college.) “Abuse” of these drugs is absolutely rampant among young adults in the U.S. And quickie diagnoses of Adult ADHD, based on ten-minute evaluations where you simply reel off the symptoms the doctor expects to hear, may be even more common. Hopefully it won’t be quite so easy to tell these young parents that, because their kid studies more or behaves better on Adderall, s/he “has the disease” the drug was meant to treat. They have been there and done that.

Maybe the reason we are so willing and eager to put kids diagnosed with ADHD or “mentally ill” adults undergoing psychotic episodes or depression is because of a lack of patience and compassion.

Does your kid or pupil drive you bonkers by squirming too much or talking all the time? Drug him up!

Does your wife stay in bed all the time weeping? Drug her up!

Is your adult daughter carrying on conversations with imaginary friends and thus embarrassing you publicly? By all means, drug her up!

Spending more time with your kid, showing your wife how much you love her as well as telling her, nursing your daughter through her crisis and talking to her in a way that would probably ground her back in reality…. Yeah, those might work, but they take too long and are labor intensive.

So pop a handful of pills so you won’t bug us (just sit still and drool quietly.) Then we can go through the McDonald’s drive-through for some Big Mac’s if you’re good.

Fast food, fast pills, fast solutions for everything. Whether they are of any real value doesn’t matter. Ain’t this a grand time to be alive!

My point exactly Rachel!!! Lovely comment. I feel exactly the same way and I am a pharmacist. Education about approaching life in an emotionally healthy way would solve most of the problems that are medicated today but obviously would not financially support current interest-groups.

It’s all about TIME isn’t it, like you say Johanna. Time for the doctor to listen and carefully evaluate, time spent with the child to find the way that suits them best for getting them to relax and concentrate on things they like doing and which are constructive. Above all, time to give the parents support and help, because coping alone – and sometimes feeling shame about your youngster’s disruptive behaviour, is so exhausting and demoralising.

I can remember one summer when we were up in Snowdonia and an ex- teacher of mine and her husband came to stay for a day or two. She was one of those teachers who one admired but was a bit in awe of, and she’d emigrated when she married and left teaching. They wanted to go walking in the hills, to see a famous waterfall there, and we only had one day with them. We set off, our older son would be about 7. Just as we made a start, he dived off, ran away, and hid somewhere in the bracken, or behind a rock. We all called for him and had to stop the walk, and searched most of the day. When we eventually found him, he’d actually gone back near our cottage, he just laughed. The teacher obviously didn’t like to get involved, but our son had messed up the walk we’d all planned for some time and were very disappointed. They left the next day. That kind of behaviour, and also compulsive lying, were very difficult to cope with. I guess if we’d had some kind of explanation for it, it would have helped us. Our younger son just observed this behaviour and felt scared I think. We must have seemed useless parents. And in later years, the lying and lack of understanding about consequences of actions, made the older brother even more scary to be with, because the outside world didn’t know about his problem, and believed him. This had tragic repercussions for us all.

This week Katinka Newman has given us an excellent YouTube video about her experience when given anti-depressants she could not tolerate, and which almost made her end her life. See ‘The Pill that Steals Lives’ (currently difficult to access from mobile devices but hopefully that being sorted out soon).

The most touching part of this account for me was to hear her teenage children talking with total honesty and great concern, about what happened to their mum, and how effectively she was taken away from them for a year. Children are always normally believed, when recounting their experiences. And this is good.
But in the case of a youngster suffering from ADHD type behaviours, particularly those who find it satisfying to lie compulsively, one can come up against serious difficulties, particularly if their account of a situation or opinion on a rival sibling suffering apparent mental illness, is believed, without balanced corroboration from parents or others who know the family circumstances and who know full well that it’s unwise to take the words of the ADHD sibling literally.

I am not in any way advocating medication for ADHD ‘treatment’ but I do feel terribly strongly that when doctors, psychiatrists, social workers and other health professionals compose a picture of their patient, they must offer the parents the courtesy of contributing, or even the individual’s school teachers, and not rely on what could be a completely jealousy-fuelled story from a sibling alone. Medical notes are there for life, and can rarely be changed. So often we don’t even know what is written there until an inquiry after the death of a loved one. And we cannot lay blame on the ADHD child because I honestly feel that if and when they lie they have no concept of the consequences long term of what they have said.

I feel very strongly about generally raising awareness of this possibility and its implications to vulnerable patients. It is not, I know, a medication RxISK, but in our son’s case, it led to one, with all the eventual horror of Prescripticide because of inaccurate information from years before which was passed like a baton, from doctor to doctor. One cannot blame anyone of course, but it is an aspect of ADHD behaviour we surely must take seriously. Compulsive lying, acted out convincingly by a person who may even believe what they are saying at the time – telling a good tale and getting carried away with having the attention of being listened to – is all the more convincing if they do, can cause terrible family disruptions and tragedies.

I take it from your account that your elder son’s word was accepted and yours dismissed somewhere along the line of your younger son’s ‘mental health’ problems? As you rightly say, this is absolutely unacceptable. To have differing views of a situation, I find quite useful – after all, it should lead to a balanced view of the perceived problem. The attitude here though, if I’ve got it correctly, is that WHAT SUITED THE PROFESSIONALS was believed and the rest discounted. Disgraceful! The fact that you were unaware of all this until it was too late is equally disgusting.
I’m not so sure that we can put this down to ADHD type of behaviours though. Yes, lying can be part of such problems, but usually those lies are more to do with misunderstandings/ difficulties in general life skill situations – arising from a lack of perception or maturity – rather than a desire to be malicious in any way.
Maybe I’ve misunderstood. Perhaps your feelings are that your son was asked leading questions, directing him in a way that the answers he gave fitted what the ‘experts’ wanted to hear. That scenario I can see as being due to your son’s vulnerabilities etc. due to his own problems/ immaturity or whatever. However, I would not regard that as him ‘lying’ but rather as him being led without having the skills to foresee the consequences and to stop things in their tracks. How often have we found ourselves ‘taken in’ by the suggestions of others – only to think later ” Hang on, no, I don’t actually agree with that – why did I not think that out at the time?” I would suggest that it has a lot to do with our expectations of certain situations – hence the reason that so many of us will hang on to every word that doctors tell us about medications!
I would suggest that your son, maybe, is the type who latches on to others’ suggestions without first thinking through their suitability? If so, I think you will find that very many other conditions need to be added to the ADHD group and put under the umbrella of “unsafe witness reporters”.
Surely, the only way forward is to ensure that NOTHING can progress simply by the word of one person – second opinions should be taken as a matter of course, both from the layman side and the professional.

Mary, your comments on the ADHD of our older son are very interesting and thoughtful. You ask whether he was believed by doctors and psychiatrists whereas we were not. I think this is probably true, judging by what happened during our younger son’s ‘illness’ over the ensuing 11 years.

But, to put this in context, you maybe need to know that prior to Olly’s suffering of side effects from RoAccutane/isotretinoin, and then even worse problems with Seroxat (prescribed for ‘low mood’ caused by the acne drug), many years before this he had been diagnosed by a Consultant as having a kind of ME when we were all feeling bad effects from sheep dip on our farm. This had prompted us to join with local campaigners (including Margaret Mar, a Peer in the House of Lords and local farmer) to get organophosphate in Dip looked at more seriously, because so many farmers like ourselves were suffering neurological effects. She and we used the same GP practice, and there was considerable skepticism expressed by our GP about our perhaps irritating persistence with getting organophosphates recognised as dangerous. We did succeed, but we all ruffled a lot of feathers in the process. Dip now no longer contains it. But, as we explained in an earlier DH Post, many older farmers still suffer severe residual irreversible damage and some have committed suicide. (See the work done on this by Dr Robert Davies, psychiatrist, of Ryton House, Taunton, which helped so many. He also saw Olly and helped him greatly to deal with the ME-type effects and ‘fuzzy brain’).

So we were already viewed by our GP as campaigners and probably ‘nice, well meaning nuts’. It took some years for the truth about organophosphates to really be accepted by which time we had moved out of sheep farming and re-located to another area and other GPs, but our Notes contained those early opinions I used when he was about 9 to try to find ways of getting Olly’s muscles working as before, and my GP remarked disparagingly about my research into benefits of certain healthy foods etc. We were also regarded as irritating because we helped Olly cope with his asthma, which was well controlled with a Ventolin inhaler, so we felt there was no need to put him onto strong steroids and indeed there wasn’t. But we were regarded as stupid parents for being wary of strong steroids for young children too. If he’d been in a life threatening situation, of course one would accept a recommended treatment, but not as a preventative measure for something he grew out of anyway at 13 and which we were led to believe was mild.

Knowing all this,, Mary, you can see why we were viewed as ‘a bit of a pain’ and so our reputation preceded us when Olly became so ill after taking and later stopping (or trying to) Seroxat. So our older son was listened to, and as you say Mary, he could well have been led to corroborate these opinions. We were raising alarm about the two drugs (R andS) and the doctors were denying it. We were so worried about his using RoAccutane that he had waited till he was 21 before so doing; we were worried because in the PIL it states that it should not be used by anyone who has had a relative with mental illness, and my father had had manic depression since he was 30. So we felt it might be risky for him, having carefully read the warnings and disclaimers. Our GP knew but didn’t seem concerned.

But Olly had been horrendously bullied at school about his appearance and the acne, and we’d tried every other remedy Pharma had to offer. I must add here, the one thing that really did work and results showed it, was using.the Stone Age diet, and Olly used it whilst waiting 3 months to see a Consultant Dermatologist, (even the GP grudgingly admitted that the results were encouraging) but the Dermatologist, keen when he was 15/16 for him to start RoAccutane, told him he’d never get rid of the scarring, so he believed her. (He did actually get rid of it in 2011 using Blue Light and laser treatment with a Dermatologist specialising in acne treatment), (when at last he tookz RoAccutane it did temporarily help, but it always recurred and we felt his acne was much more a food intolerance problem than straightforward acne, but what did we know, we were not doctors….how dare we venture our outdated opinions… The fact that my own acne definitely was, didn’t count.)

However, naturally when 21 he really wanted all the acne breakouts to stop, he was at Uni and looking forward to celebrating his 21st birthday with his college mates. He wanted to look his best. So we said if he’d weighed up the pros and cons (he was a talented biology student and biochemist) and felt it was safe, it was his decision and we were still worried but could see his point of view totally. So he took it. As things turned out, awful decision..

He soon had Seroxat prescribed on top of it for the frightful low mood that engulfed him and the weird suicidal thoughts. His old memories of the cruel bullying he’d suffered at school about his appearance came back like PTSD. His ‘learning’ memory seemed to disintegrate. His confidence in himself plummeted. He took himself off to the USA with a fellow student in the summer to distract himself and shake all this off, and he went to the Grand Canyon where he took amazing photos, but by October, when back in Uni, although he’d stopped Seroxat before the USA trip, he was shaking so much with panic surges in his brain and what we now know to be akathisia, that he could not sit still in lectures. His first year exam results had been so good, top of his group, that the Dean had written to congratulate him. He’d loved his work, so we can’t put this down to anxiety about studying.

By Christmas he was getting OCD type suicidal thoughts and tears would run down his face, as he described it, ‘coming for no logical reason’. He had asked to go into hospital in November for his own safety as the mental urge to kill himself was so strong. It was at this point that we and his ADHD older brother took him in together, and the brother was taken away to talk to the admitting Registrar. We were left in the waiting room with Olly who was shaking. The GP had done the referral and the implication was that we were fussy overprotective parents who had had the temerity to raise concerns about Seroxat’s effect on our son. (!)

As he grew worse and worse (and we have heartbreaking recordings of his mobile phone calls to us -they didn’t take his mobile away so he rang constantly and we didn’t know what to do – if we reassured him, that was apparently wrong according to staff, but if we ignored him he just rang and rang, so we made a recording to give the psychiatrist so he knew what Olly was saying – it was things like ‘I know you hate me, and no wonder, I am evil’, he believed he was the Devil and had committed terrible crimes.

The psychiatrist was reluctant to see us so we wrote to him. He finally saw me alone ( husband at work) for long enough to berate me for taking any notice of the PIL side effects for both drugs – and by now they’d added more – he said he had no time for reading letters, and actually said’how dare I raise these drug concerns with him’. He rubbished Dr Robert Davies’ organophosphate damage report (as we were wondering if that had any bearing on what had happened to Olly), We were told we could no longer visit Olly who was still a voluntary patient. Meantime Olly’s girlfriend at Uni told her mum, a Portugese pathologist, who rang from there to say ” Do not let them give him SSRIs, they can cause this uncharacteristic behaviour.” Dr Robert Davies had warned in his report that if given at all if really necessary, they should be in very low dose, and tricyclics should not be used for those like Olly with a history of OP intolerance, something to do with acetylcholine. But the psychiatrist wouldn’t discuss it, or speak with Dr Davies and said his research was all flawed anyway. Interesting to see that Olly’s liver results, which had to be monitored if you are on RoAccutane/isotretinoin, were off the scale, but the GP reading them said they were nothing to worry about! We only looked at them again recently. At the time we were more worried about the suicidal ideation Olly was lost in. And anyway, if we had, it would have been viewed as more fussy parenting.

So Mary, getting back to the lying of the ADHD son. Maybe there were deep issues of sibling rivalry which have never been addressed. But the older son has caused a great deal of trouble for many, using manipulative tactics and telling untruths, both in the family and in the workplace and maybe, as you say, there is more going on here than ADHD. Sure, he has told other parties ‘what they want to hear’ about us and has probably been ‘welcomed’ more than just ‘led’ into doing so. You can see that at that first time in hospital and in the last year of his life, up until Olly’s death, we were always annoying because we questioned judgements when we saw how ill the drugs were making our younger son.

The one time our older son was assessed by a psychologist when aged about 9 he was described as ‘lacking maturity’. He was certainly dyslexic with an eye problem. There is so much more to this than I can write here, or would even feel that I should in deference to him but my point is that parents need to be listened to and viewed as helpers alongside siblings, teachers and all those closely involved with the mentally unwell patient’s life, as in the ‘Open Dialogue’ system of mental health care in Lapland. Worse than not being listened to we were judged and blamed for damage caused by drugs, and even when we reported the horrendous bullying Olly received at school about his appearance, the Headmaster there when he was 15 was in denial. The PTSD throughout his short life about this was interpreted as body dysmorphia by doctors. No one ever, it seems to us, took a listening overview and got the picture properly. After he died, one GP who had been extraordinarily unhelpful all the way through, (particularly near the end when we were saying Olly was talking seriously about suicide to us and we felt as there had been an unsuccessful but carefully planned attempt, we were absolutely sure it would happen) -this woman a spoke on the phone to me and said she was very sorry about his death and that ‘of course, sometimes we doctors do make mistakes’….

Heather, a tragic tale indeed – my heart goes out to all of you. For a parent, not being believed (when all you are doing, in fact, is trying to help the medical people to have a complete picture) is a gut-wrenching experience isn’t. We fostered our family of five – the one who has suffered due to Seroxat and other medications since being just 20 months old when they came to us as a complete family. The suffering for us has, at times been almost unbearable, due mainly to not being believed. How much worse it must be for your family as the birth parents of both of your sons!
I sincerely believe that ‘compassion’ should be top of the list of requirements for any candidate wishing to be medically trained. It wouldn’t go amiss for the same to apply to anyone wishing to follow a career in pharmaceutical companies either. If this could be so, maybe then our voices could be heard without all the battles that seem to surround the simplest comments made by us who dare to question!
Take care Heather – my thoughts will always be with you.

Mary and other contributors to this Blog, thanks so much for reading Olly’s story and commenting so kindly and supportively. I think when a loved one dies as he did, you don’t care about yourself any more, but you just want the person to be exonerated, understood, and you want to tell the world how brave they were, and how cruelly wronged. Particularly when it’s a beloved child. It has been very helpful for us to tell his story. And so helpful to know he wasn’t alone in what he went through by reading about others here, awful though that is.

Julie Bailey, the campaigner who raised the alarm about the Staffordshire hospital, had a coffee shop where patients’ relatives could get together and pool their experiences. Parents of those who commit suicide are very alone, shocked and sometimes feel shame. They can’t find each other, but through Forums like this, solidarity can grow. My husband and I are so grateful for having learnt so much here, which has helped us to cope.